Ok so I am finally ready to sit down and write my frustrations. We went to SLC last week and again came home with no new news as to what is going on with my little guy. We did get told that he has a lot more abnormal activity on the left side of his brain and are now concerned and want to do cognative testing. So in other words they think he may be getting some brain damage and causing him to have some mental disabilities. I have noticed a huge change in him over the last couple of months and even more so since I was away. He seems to act like he is autistic/ocd/adhd rolled into one at times. It is very heart breaking to watch him go through this and I know it bothers him. It breaks my heart when he tells me he wishes he would've never seen the bright lights because he wants things to go back the way they were. I am having a really hard time lately trying to cope and deal with this, that is why it has taken me a while to update this. I am frustrated with Dr.'s and don't know what to do about it. I want answers and I want them yesterday. I have seen my little boy change so fast in the last couple of months that I almost don't even recognize him. He has gained 20lbs in the last 2 months which is a lot going from 52lbs to 70lbs and I keep getting told its a growth spurt. I have a hard time believing that! He has gone from being my little shadow always wanting to help with whatever I am doing to not listening, hitting, pinching, scratching, and being just plain mean. Every once in a while I will see glimpses of him peek through. We have no appointments scheduled and that makes life uneasy for me. I feel like I have hit a dead end and can't find my way out.
We are so thankful for all our family and friends for all the love and support that they have given us. We have had so many ask what they can do to help. That has meant so much just knowing you are there when we need you. We don't know what we can do and don't know what anyone else can do, but just pray for him. I am sorry this is so depressing I am trying to be positive I have had a rough month.
Tuesday, July 5, 2011
Tuesday, June 28, 2011
More Primary's
We are yet again heading to SLC for more appointments. We are going to see Dr. Benedict "stroke specialist" have another EEG done, see Dr. Barkan "seizure specialist" and more blood work, and possibly schedule his angiogram. I hope Dr. Benedict can give us some answers. Brendan had a seizure last Monday and no warning signs and Chris was asleep so he had to try and wake dad up poor kid, I was out of town. He only seized for about 4 min. this time. We were instructed to increase his meds. He seems to be even more agitated and aggressive also clumsy. I hope we get some answers soon. I want my Brendy back. Having a tough time this week, but easier than some I'm sure. My heart aches for my sister, but she has shown me so much strength these last couple of weeks. I don't know how she does it she is so inspiring. I love you pickle.
Thursday, June 23, 2011
Trever, 3, lived life to the fullest
Trever Mykel Stevenson, of Howell passed away Thursday, June 16, 2011 at Mott’s Children’s Hospital in Ann Arbor Michigan . He put up a good fight in his short 3 ½ years of life of having an auto immune disease which lead him to needing two bone marrow transplants. He endured much pain from his transplants and still seemed to be able to have a smile and giggle for all. His mother and Trever had such a deep love and connection that all could see the love they shared. We are thankful for the community for their love and support with his bone marrow drive and benefit dinner that helped with expenses to be able to travel to see specialists in Seattle .
He was so full of life you wouldn’t know he was sick unless he had to have his oxygen on because he didn’t miss a beat. Anyone he came in contact with was putty in his hands. He had such a way with people and he loved and lived to make people laugh and brighten their day. He always had his cheerful smile and wave to greet everyone he saw. With his many trips and visits to the hospital and doctors he has made an unforgettable imprint in the hearts of many nurses, doctors, and staff members. He will be greatly missed and never forgotten. He may have been small in stature but he was a giant in spirit. His mother, Krystal was unable to work due to his serious illness and time it took to care for him. Now she is in need of work after she can cope and heal from his passing. Due to Trever’s illness there was not a life insurance company that would insure him. The family would like to receive donations in lieu of flowers to help with expenses and make a donation in memory of Trever to the hospital or the National Bone Marrow Organization. There has been an account set up at Chase bank where donations can be made out to the mother Krystal Stevenson.
The viewing will be held Wednesday June 22 from 1pm-8pm the service is Thursday June 23 at 11am. A website has been set up in memory of Trever at http://memoriesoftrever.blogspot.com Also a benefit dinner will be held on August 6th at the Eagles Club in Howell, for further details contact Nicki Jo Dragonov 810-623-3544. Friday, June 10, 2011
Trever is in need of lots of prayers and a miracle
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| My 3 yr old Nephew, God bless him. |
The neurology team stopped by. They think that he may have a little lesion on his right side. So they are thinking they would like to do an angiagram to see if there is any blockage causing this or if there is a flow problem. So how they explained it to me was the veins in the brain are like a sprinkler system. You have a main hose that branches off into little sprinkler heads and sometimes dirt or debris get in there and block of a set of sprinkler heads and this will cause other sprinkler heads down the line from it not to receive flow causing that section to die and be damaged. Or there could be something constricting the main hose causing flow not to get to the end of the line on both sides and again the same end result. It is suspected that the main artery to the brain is being constricted and causing damage on both sides. They found something suspicious on the right side after having the EEG video and going back and looking at the MRI. The spot on the right side doesn't jump out at you like the left side. So we will be coming back in about 2 weeks to meet a stroke specialist and maybe doing that procedure. They suspect that the keppra is not working and may look into changing his meds. They did send us home with some rescue medicine called versed. We would only give it to him if his seizures last 5 minutes and after the medicine if he is still seizing after five more minutes then we would need to call ems. Scary to think about but at least we now have some meds to give him and a seizure action plan.
Wednesday, June 8, 2011
So we made it and got him hooked up to the EEG and two hours later he had a pretty good size seizure 33 min. Scary but he has had worse hopefully we will get some answers. They got a good reading of his seizure which is good. The nurses said usually you wait ten days and still don't get any activity. So this is a blessing to have it happen so quickly. He is still out of it and really tired.
Monday, June 6, 2011
Monday, May 30, 2011
Our 2nd visit to Primary's
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| May 29, 2011 |
We met with Dr. Barkan and I really am confused as what to do. She wasn't very organized and didn't listen to everything that has happened and would move from one thing to the next before we had a chance to inform her of what all has been going on with B. She looked at his MRI and read the report and said she would like to do another one with epileptic protocol. She is not convinced he had a stroke and thinks it could be siezures causing the problem. She wants to have him admitted for 5 days and do an eeg study and take him off his meds and monitor his brain waves.
I called my neurologist in I.F. to ask his opinion and now I don't know what to think. He has been so good to inform us of everything and can explain things in such a good way that we understand. He doesn't think it is necessary to do those tests because he doesn't think it is just seizures he is having. He was very good to answer every question I asked him and was really patient with me. I called him Friday night and he talked with me for at least 45 min. Then even called back to tell me lets do an eeg to see if his meds are working. So I really respect his opinion and know he is doing all he thinks is necessary. So what do you do??? That is the big question. I am open to your opinions so please let me know.
Back to Dr. Barkan, she was really good to tell us that there is nothing wrong with getting more than 1 opinion and to keep getting them until we are satisfied or get the answers. If any Dr. gets upset with this then find a new one because it is your child and you just want to find out whats wrong. She said she's not going to take over but do her part in trying to figure out what is going on and if she can't then she will refer us else where i.e. the mayo clinic or Cleveland, Seattle or any where else she thinks could help us. So that is nice to hear from her. But do I really want to put Bren and our family through all that with the risk of not having an answer? I do and I don't.
It would be nice to have someone tell you what your suppose to do and make these tough decisions. So any volunteers lol. So there you have it my crazy weekend. I am glad he is as healthy as he is things could always be worse.
Friday, May 27, 2011
More updates
We went to the neurologist in town today and were told the tests in SLC came back normal. He had gotten a postive on his ana at eirmc and they repeated the test in SLC and it came back negative. We are waiting on one more test result and then we just wait and see how he does. Kinda crazy, so they are more confused as to what is going on. They have done all the tests that they can think of to do and still not an answer as to what is going on with him. We are in the process of switching his seizure meds due to the fact that he is so agitated and not himself. If he does end up having another stroke then we will go back to the Dr. at Primary's that ruled out Lupus and treat him for one of their diseases. He is doing pretty good with his physical therapist and a little better with me. Hopefully tomorrow we will get some answer's from the Rehab Dr. and other neurologist at primary's. Other then that we just watch him if he is having any signs of a stroke and if he has any more seizures. A little frustrated but hopeful that things will turn out.
Thursday, May 12, 2011
I dislike the unknown
Today we went to the neurologist in town and he still thinks that it may be lupus. He says "I know he looks to freakin healthy to have it but there are some tests that can't rule it out and doesn't understand what else it could be." He says we may have to wait it out and see if it gets worse or develops more to get the evidence we need to find out what this thing is. He wants to switch his meds because he has noticed he is more aggressive and agitated. Which I pray this new one will get my loving happy go lucky Brendy back. Also that it will work just as well so we won't have any more of those horrid seizures. We also need to do .... you guessed it MORE BLOOD WORK. Good thing he is so tough and brave.
We went to our first Physical Therapy on Tuesday and it was great. We learned lots of things to work on with him. He was so excited at the office but when we got back home not so much and it was a chore to try and get him to do his therapy. I blame his meds for his stubburness. I found bribing is becoming my negotiating tool. Whatever works I guess. So if anyone is up for the challenge and would like to work with him for an hour a day by all means come on over.haha
I can't believe he is going to be 7 on Saturday. He has been on the countdown ever since it was 11 days out. I also have a long list from him. lol I think he is taking full advantage of his illness. Who could blame him. If only my pocket book was as compassionate.
He is wanting to go to school now that there is only a week and a half left. Personally I think I may stress out more if he does go for fear something will happen and no one will notice. But on the other hand it will be nice to not have to break up Sage and his fights like every 20 minutes. lol Now I know how my mom felt with my brother and I hehe. It was always Jake though I was just defending myself ;)
We went to our first Physical Therapy on Tuesday and it was great. We learned lots of things to work on with him. He was so excited at the office but when we got back home not so much and it was a chore to try and get him to do his therapy. I blame his meds for his stubburness. I found bribing is becoming my negotiating tool. Whatever works I guess. So if anyone is up for the challenge and would like to work with him for an hour a day by all means come on over.haha
I can't believe he is going to be 7 on Saturday. He has been on the countdown ever since it was 11 days out. I also have a long list from him. lol I think he is taking full advantage of his illness. Who could blame him. If only my pocket book was as compassionate.
He is wanting to go to school now that there is only a week and a half left. Personally I think I may stress out more if he does go for fear something will happen and no one will notice. But on the other hand it will be nice to not have to break up Sage and his fights like every 20 minutes. lol Now I know how my mom felt with my brother and I hehe. It was always Jake though I was just defending myself ;)
Sunday, May 8, 2011
Amber this ones for you! The revenge on Tom.
| Tom Swifty |
I thought it was so funny that my boys were so afraid of a little ole' turkey. He would meet them at the door of his cage and try and peck their poor little fingers in their attempts to feed and water him. So finally after getting the door open he had a nice karate kid to greet them. I would watch out my window and giggle a little and yell words of encouragement to them. hehe That was one of the highlights of my day. I know you are all thinking what a mean mom laughing at their challenges.
Well I only laugh because it takes me back to my childhood when we had tom turkeys not just 1 but 4 and my lil bro loved to chase and torment them when they were just little guys and well they grew and decided to get revenge on not just him but all kids who dared to come in the yard. There were many times we were all yelling for help atop our swing set and my mom would laugh and laugh and finally come to our rescue.
Well the day came when I came to my kids rescue. I decided I would feed tom for them and he greeted me the same way he had my kids all these months. Only he had more than 1 karate kick for me. Needless to say he has kicked his last kick. I tackled that mean bird and drug him to the chop block and well in my attempt to do the deed he got away. So I chased him around the yard I finally got a hold of him ( he managed to get his kicks in) and this time I hog tied his legs together so it wouldn't be so hard to ketch him if he decided to elude me again. So I gave him one big swing at his throat and he jerked my finger right in the way. Yeah I chopped my finger and nicked his neck. I sent in my trusty helper Bren to get my knight in shining armor to come to my rescue. After 3 convincing tries he finally comes to my rescue. He finished ole' Tom off and helped with the skinning. I prepped him for the crock pot and well a few hours later we sat for dinner.
Well that mean ole' turkey thought he had the last laugh it was the toughest and most disgusting flavored bird ever! So I thought I would let Daisy have her long awaited meal and feed Tom to her. He was a bad egg through and through.
Friday, May 6, 2011
Our trip to Primary's
We went to Primary Children's yesterday and it was a relieving day. We found out that he doesn't have Lupus, MS, or ADEM. So that was the relieving part, but now we are back to square one what the heck is going on with him? They are sure that he had a stroke and now the question is why and what caused it. So we had to get more blood drawn and an echo to help us figure it out. We will be going back to Primary's on the 27th of May to meet with the neurologist and the rehab Dr.'s. Hopefully they will be able to figure this out. He was started on a baby asprin for a safety precaution against any more strokes. It was a long and worthwhile day. I am so glad at the news we received and Chris seems to be doing a lot better after hearing this(he doesn't seem as stressed out and worried) I want to thank all those who have been praying and offering us help in anyway they can. Without your love and support I don't think we could make it through this.
Sunday, May 1, 2011
Physical Therapy?
So they think that it was a stroke that is causing Bren's hand to have weakness. I have been asking about therapy for him and they want to find what is wrong and get a diagnosis before we worry about that. I am not sure I want to just sit and wait. Why not get him into therapy now so we can be that much farther ahead and on our way to recovery?! Plus shouldn't you try and do some sort of physical therapy to help him so his muscles and tendons don't shorten? So I have been searching the web for any answers and haven't found any. But I have found some ideas of therapy that I can do with him. It is hard to get a child his age to do hand stretches like you would have an adult do. He complains and gets bored with it fast and says "I can't its too hard".
Tonight I went to walmart and got tennis balls, racquet balls, glitter/water filled bouncy ball, the game operation(which I never like because when I hit the little metal piece with the tweezers it would freak me out haha), play-do, craft sticks (to make a hand splint for night), finger paint, velcro mitts to play catch, and a hand weight. Hopefully this will keep him entertained enough and work to get his hand on the mend and go back to using it. If anyone has any ideas or suggestions please let me know. I have been contemplating on putting him in piano to help get those little fingers moving. Also I have read and learned that music is one of the only activities that really uses the whole brain.
His birthday is coming up here pretty soon so you know what he is going to get (right) besides tests and shots? Physical therapy toys lol. Hopefully he will appreciate them and have fun using them. I know he will he is such a sweet kid. He always and frequently says to me " mommy I love you so much your the best". He is my heart melter. He sure knows how to pull at my heart strings, I love that kid so much and it about kills me to see him have to go through some of these tests and have some of the side effects from his meds. B bear you are the best son a mom could ever ask for! Always stay as sweet and loving as you are.
We have our appointment to Primary's Thursday so hopefully we will have some better ideas of what the plan is going to be and what we need to do.
Tonight I went to walmart and got tennis balls, racquet balls, glitter/water filled bouncy ball, the game operation(which I never like because when I hit the little metal piece with the tweezers it would freak me out haha), play-do, craft sticks (to make a hand splint for night), finger paint, velcro mitts to play catch, and a hand weight. Hopefully this will keep him entertained enough and work to get his hand on the mend and go back to using it. If anyone has any ideas or suggestions please let me know. I have been contemplating on putting him in piano to help get those little fingers moving. Also I have read and learned that music is one of the only activities that really uses the whole brain.
His birthday is coming up here pretty soon so you know what he is going to get (right) besides tests and shots? Physical therapy toys lol. Hopefully he will appreciate them and have fun using them. I know he will he is such a sweet kid. He always and frequently says to me " mommy I love you so much your the best". He is my heart melter. He sure knows how to pull at my heart strings, I love that kid so much and it about kills me to see him have to go through some of these tests and have some of the side effects from his meds. B bear you are the best son a mom could ever ask for! Always stay as sweet and loving as you are.
We have our appointment to Primary's Thursday so hopefully we will have some better ideas of what the plan is going to be and what we need to do.
Thursday, April 28, 2011
Lupus Foundation of America
Lupus Foundation of America: "- Sent using Google Toolbar"
So I have posted this link because now the Dr. thinks it is lupus. I am not sure how I feel about it. I don't know a whole lot about Lupus. The plan is to get more blood tests done and then off to Primary Children's next week. So at least we are getting closer to some answers and knowing what we are in for. We went and some of his blood drawn tonight and he is going back in the morning for a glucose test due to the fact that he has gained 10lbs in a week. Crazy because he isn't on steroids or any other kind of meds that would make him gain weight. I guess if it is lupus it is a mild case because usually children are so sick and have been so sick for a long time before getting the right diagnosis. So it is a blessing that we had these things happen to him. They are thinking that he had a stroke and his hand will be affected permanently and he is at risk for having strokes in the future. The Dr. said it is kind of crazy to say it is mild where he has been having strokes and seizures but it could be a lot worse. So I guess I am thankful for that. As of now I guess I don't know how I feel it is like a nightmare and is not really happening. So maybe in the next few days I may have a break down again. It seems to take about 3 or 4 days before it hits me. Which is good because Chris has a hard time at first and is somewhat coping by the time I have my breakdown.
So I have posted this link because now the Dr. thinks it is lupus. I am not sure how I feel about it. I don't know a whole lot about Lupus. The plan is to get more blood tests done and then off to Primary Children's next week. So at least we are getting closer to some answers and knowing what we are in for. We went and some of his blood drawn tonight and he is going back in the morning for a glucose test due to the fact that he has gained 10lbs in a week. Crazy because he isn't on steroids or any other kind of meds that would make him gain weight. I guess if it is lupus it is a mild case because usually children are so sick and have been so sick for a long time before getting the right diagnosis. So it is a blessing that we had these things happen to him. They are thinking that he had a stroke and his hand will be affected permanently and he is at risk for having strokes in the future. The Dr. said it is kind of crazy to say it is mild where he has been having strokes and seizures but it could be a lot worse. So I guess I am thankful for that. As of now I guess I don't know how I feel it is like a nightmare and is not really happening. So maybe in the next few days I may have a break down again. It seems to take about 3 or 4 days before it hits me. Which is good because Chris has a hard time at first and is somewhat coping by the time I have my breakdown.
Friday, April 22, 2011
We wait some more
So the Dr. called and canceled B's appointment, because they haven't gotten the all the test results back. So yes a whole entire weekend. Now I'm getting a little frustrated and anxious. I can't handle the unknown for very much longer. I want my baby to be getting better not waiting for things to get worse. Patience patience patience I need to practice I guess. Hopefully they will all be back soon. Our next appointment is scheduled for Thursday and if they get the results sooner they will call us in.
Wednesday, April 20, 2011
Trip to the ER
So in my last post I mentioned the blood patch. Next time I will take the blood patch over the ER visit. So around 2:00pm yesterday Brendan started seeing a bright light again and was not making sense the he couldn't look at me or focus on what I was saying. Then his head started twitching to the right and was not responding to me at all. Thank goodness Chris was home!!! I called 911 and he called our sister to come get the other kids. The emt's arrived so quick and while explaining to us what a seizure is he started having the most awful seizure his little body was jerking all over and it lasted 15 long minutes. We decided to take him to the ER and during transport he had another then on arrival he started another and continued to have at least three more, one right after another. They were giving him vallium and ativan 2 doses of each and finally ordered in a seizure medicine. After things seemed calm and we got moved from the trama room it was 6pm. He was sound asleep he would lift his head open an eye and then go back to sleep. I think he was just makin sure we were still there. Then about 8pm he was awake enough to eat a popcycle and respond to our question he was really confused and kept repeating himself. He new where he was and wanted to go up to the peds floor so he could have the "fun" bed. His meds made him really goofy and loopy so it was hard to keep him still and quiet. Finally at 10pm then sent us up to peds and the nurse didn't like how his IV looked so she untaped him and adjusted it and boy was he ticked. He was in a lot of pain from it and kept crying for most of the night. Poor Kid. We made it through the night and he was such a sweetie, he wouldn't let me leave his side. Then the morning came and he was pretty good until the Dr. came and told him he needed to get up and walk around to see if his headache would come on when he stood up for a while. Then he was a total different kid. he was kicking spitting yelling and hitting me. He informed us he was never going to get out of bed and walk EVER! So I said fine and let him calm down and in about 5 min. he was overly lovey he was kissing me and hugging me and I was the "best mom ever". Then he wanted to put his feet on me and in my face and on my lap. Then he would break out into tears and say he was so sad just sad and to leave him alone. It was so hard for me to see my little sweet boy go through so many moods in such a short time and they were so drastically different. Finally he had to go to the bathroom and wanted to walk into there and not us the urinal. So now that it was his idea he was fine to start walking again. He was doing really well and then it was time for his CT and it was noon and he hadn't had any lunch and had just finished his IV of meds and already agitated, you can imagine how that went. We did get him calm again and he laid perfectly still even when they messed up and had to move him to a different room and use another machine. He was my b bear again. They finally let us go home at 3:30pm so we got the other kiddos and went to grandmas for Sagey's birthday party. man what a week. I hope this helps feel free to email me or post comments and I will try to respond as soon as I can.
Tuesday, April 19, 2011
Postponed until Friday
So the Dr. doesn't think we will have all the test ready until Friday so another long day to wait.
Brendan has been doing pretty well. He still is having pain in his back from the spinal tap.Yesterday he went to school and got a pretty bad headache so we brought him home and he was fine as long as he was laying down. Again today he has a bad headache so I talked with the Dr. and his instructions are to lay flat on his back and drink lots of liquids and caffiene. Yeah so how am I suppose to keep a six year old in bed all day let alone with giving him caffiene. Crazy! Wish me luck. Hopefully it works so we don't have to give him a blood patch.
Brendan has been doing pretty well. He still is having pain in his back from the spinal tap.Yesterday he went to school and got a pretty bad headache so we brought him home and he was fine as long as he was laying down. Again today he has a bad headache so I talked with the Dr. and his instructions are to lay flat on his back and drink lots of liquids and caffiene. Yeah so how am I suppose to keep a six year old in bed all day let alone with giving him caffiene. Crazy! Wish me luck. Hopefully it works so we don't have to give him a blood patch.
Sunday, April 17, 2011
To update/inform those on my B bear
The past few weeks to months we have been seeing some strange things happening to B's poor little body. The first one was when I posted on FB and we thought he had CO2 poisoning back in February. He had a bright light in both eyes and was not able to focus on us or really even respond. When he was talking he didn't make any sense. Scary!!! He did get a headache afterwards and has had a few more episodes similar to that but with out the lack of focus and speech thing. They would come every couple of weeks and now they are more frequent about every 3-5 days, but without headaches and the light seems to be taking over most of his vision. Luckily they only last about an hour.
Well then I noticed him holding his hand funny every once and a while and just ignored it :( Now the last 3-4 weeks I have noticed it all the time. I mentioned it to Chris about 2 weeks ago and it kept getting worse. As of now it has stayed the same for about a week. He can't open his had all the way and has a hard time gripping. His writing is getting worse no matter how hard and how much time he takes on it. He is right handed(RH) and now only uses his RH to write with. He almost always has it in a fist behind his back or in a claw like position. When he runs it doesn't sway next to his body like his other, it drifts behind him. Even when he picks up his brother his hand is usually closed and doesn't support him if he is wrestling on the ground he now almost always gets up with the LH.
So after going into the Dr. Smith he decided it was time to see a neurologist. So we waited an entire long week an a half for the appointment, 2 MRI's, an Eeg, blood work, chest x-ray, overnight in the hospital and a spinal tap later. Still unknown what is going on with this little guy. Amazingly he loves to go to the Dr. and wasn't ready to leave the hospital after just 1 day. He said I can't leave mom they are bringing me dinner tomorrow. lol I love that kid he cracks me up. I do have to add that he did amazing with the MRI's and EEG he laid completely still for 35 minutes for each test, so a total of 1hour and 45 minutes. The blood work was nothing he watched them as the tubes were filling up and the spinal tap well he just shocked everyone. He held so still for as painful as it was he cried out a little ouch and a couple of tears and that was it. Then he had to lay flat no pillow or anything for an hour.
You tell me how many 6 year old's you think could do this. I know he did have help from his father in heaven and I am so grateful for the priesthood and for those who hold and has given our family blessings this past week. I do also feel the love and support from our family and friends and am so thankful to them. We would not be able to endure this without all of you.
Again we have to wait for more results. Argh that is so awful I want to know like yesterday. I guess I need to practice my patience.
So some of the test that we have done has given us little info to research. The MRI's showed a lesion on the left lobe of his brain, At first they thought it looked like a non cancerous tumor or an inflamitory infection called ADEM (google it if you want understand better), but then then 2nd one showed it was an old lesion and has calcium build up. This means it is an older lesion. The question of the day is how old a couple of months or years what?! Good news to that is it is most likely NOT a tumor. YAY!!! But could it be from a stroke or ADEM or maybe MS(which they think is unlikely also but a possibility). The EEG did show that the left side of the brainwaves are functioning slower? Not real sure what that really means?!? The labs and spinal tap as of today have come back normal but there are still a couple of other tests still pending. The big one we are waiting for is the MS panel. Yikes!!!
The plan for Thursday is to go over the other tests that come back and further findings from other specialists on the MRI's. We may need to do a CT. we will do future MRI's to keep an eye on things. Also if it does turn out to be ADEM we will head back to the hospital for a few days and put him on a really strong dose of IV Steroids. We will most likely do physical therapy, but first they are focusing on a diagnosis.
So that is the latest I would ask for you to please keep this little guy in your prayers and know that we love and appreciate all of you. I will try and update this as soon as I can and after his appointments. Oh and please don't feel sad for him he is so excited to go to the Dr's and really doesn't act like anything is wrong. You wouldn't be able to notice especially if I didn't let you know about his arm. I asked the teachers and other family if they have noticed it and nobody did. So please keep a smiling for Brendy bear, because if you ever have seen him he is always all smiles and it is the most amazing smile it warms your soul and melts your heart. That pic only does a fraction of justice. Love to you all and wish your families well.
Well then I noticed him holding his hand funny every once and a while and just ignored it :( Now the last 3-4 weeks I have noticed it all the time. I mentioned it to Chris about 2 weeks ago and it kept getting worse. As of now it has stayed the same for about a week. He can't open his had all the way and has a hard time gripping. His writing is getting worse no matter how hard and how much time he takes on it. He is right handed(RH) and now only uses his RH to write with. He almost always has it in a fist behind his back or in a claw like position. When he runs it doesn't sway next to his body like his other, it drifts behind him. Even when he picks up his brother his hand is usually closed and doesn't support him if he is wrestling on the ground he now almost always gets up with the LH.
So after going into the Dr. Smith he decided it was time to see a neurologist. So we waited an entire long week an a half for the appointment, 2 MRI's, an Eeg, blood work, chest x-ray, overnight in the hospital and a spinal tap later. Still unknown what is going on with this little guy. Amazingly he loves to go to the Dr. and wasn't ready to leave the hospital after just 1 day. He said I can't leave mom they are bringing me dinner tomorrow. lol I love that kid he cracks me up. I do have to add that he did amazing with the MRI's and EEG he laid completely still for 35 minutes for each test, so a total of 1hour and 45 minutes. The blood work was nothing he watched them as the tubes were filling up and the spinal tap well he just shocked everyone. He held so still for as painful as it was he cried out a little ouch and a couple of tears and that was it. Then he had to lay flat no pillow or anything for an hour.
You tell me how many 6 year old's you think could do this. I know he did have help from his father in heaven and I am so grateful for the priesthood and for those who hold and has given our family blessings this past week. I do also feel the love and support from our family and friends and am so thankful to them. We would not be able to endure this without all of you.
Again we have to wait for more results. Argh that is so awful I want to know like yesterday. I guess I need to practice my patience.
So some of the test that we have done has given us little info to research. The MRI's showed a lesion on the left lobe of his brain, At first they thought it looked like a non cancerous tumor or an inflamitory infection called ADEM (google it if you want understand better), but then then 2nd one showed it was an old lesion and has calcium build up. This means it is an older lesion. The question of the day is how old a couple of months or years what?! Good news to that is it is most likely NOT a tumor. YAY!!! But could it be from a stroke or ADEM or maybe MS(which they think is unlikely also but a possibility). The EEG did show that the left side of the brainwaves are functioning slower? Not real sure what that really means?!? The labs and spinal tap as of today have come back normal but there are still a couple of other tests still pending. The big one we are waiting for is the MS panel. Yikes!!!
The plan for Thursday is to go over the other tests that come back and further findings from other specialists on the MRI's. We may need to do a CT. we will do future MRI's to keep an eye on things. Also if it does turn out to be ADEM we will head back to the hospital for a few days and put him on a really strong dose of IV Steroids. We will most likely do physical therapy, but first they are focusing on a diagnosis.
So that is the latest I would ask for you to please keep this little guy in your prayers and know that we love and appreciate all of you. I will try and update this as soon as I can and after his appointments. Oh and please don't feel sad for him he is so excited to go to the Dr's and really doesn't act like anything is wrong. You wouldn't be able to notice especially if I didn't let you know about his arm. I asked the teachers and other family if they have noticed it and nobody did. So please keep a smiling for Brendy bear, because if you ever have seen him he is always all smiles and it is the most amazing smile it warms your soul and melts your heart. That pic only does a fraction of justice. Love to you all and wish your families well.
Tuesday, April 12, 2011
A day in the life of...
I want you all to please check out my dear friends blog. she is such a great and caring person and her family is going through trials that no one should have to. Please please voice your opinion and stand up for our soldiers!!!
I love you Sadie you are amazing. Please tell Seth thanks for his devotion to our country and that we love and miss him too.
A day in the life of...: "- Sent using Google Toolbar"
I love you Sadie you are amazing. Please tell Seth thanks for his devotion to our country and that we love and miss him too.
A day in the life of...: "- Sent using Google Toolbar"
Monday, March 21, 2011
My photography class
So I have been taking a photography class online from one of my sisters friends. She has the most amazing pictures. I wanted to share a couple of photos that I took and am so excited about. They aren't prfessional quality by any means but I love em.
Sunday, March 6, 2011
Part 1 of my Vegas Trip....
So, I again have let a couple of months fly by without a post, but February is a short month so that doesn't count as a month right?!
Any hoo Chris and I were able to go to Vegas without the kiddos and it was fabulous. We were kid free and had 70 degree weather all week. We walked and walked and walked some more. By the end of the day we were waddling to our room from stiff and sore joints. Can't they make there sidewalks a little softer ha ha. So I had the best work out in my life that week. at least my legs have never been so sore in my life.
These were some pretty cool dress/skirt outfits the price was not so much $60-$90
Later down the road found some for $15. You gotta be careful and bargain shop because the prices do vay a lot on things.
This was a total accident pic but it still made a nice momento this is the nice part of the strip stamped sidewalks he he I guess I must be a small town girl if I notice things like that. Your lucky if you have curb and gutter around my neighborhood.
One of many fabulous sculptures outside of the casinos. My neck was a little sore from all the tall buildings and gauking at the spectacularness.
Planet Hollywood

This is the excalibur
Inside the Paris I absolutely loved this casino it wasn't dark and depressing like the rest. I mean look at the ceilings you feel like your outside.
Any hoo Chris and I were able to go to Vegas without the kiddos and it was fabulous. We were kid free and had 70 degree weather all week. We walked and walked and walked some more. By the end of the day we were waddling to our room from stiff and sore joints. Can't they make there sidewalks a little softer ha ha. So I had the best work out in my life that week. at least my legs have never been so sore in my life.
So my first pic is of the porn card ladies that stand on the side of the side walk flicking cards and trying to get as many men as possible or desperate enough to grab them. Ha ha it was a good time after a while it got annoying and so to make it more fun for us I would tell Chris loudly to grab one you know you want to hurry hurry. he he I don't think they appreciated that I did get some if looks could kills looks.
The eiffle tower (the little one).
Spray paint artist. This was really cool to watch. He made it look so easy. Im sure I could pick this talent up in no time. They only took about 15 minutes. He was actually easy on the eyes but this is the only head shot I got and yeah he had to be making a goofy face. Oh well Chris was happy he said now I wouldn't be lusting after him. ha haThese were some pretty cool dress/skirt outfits the price was not so much $60-$90
Later down the road found some for $15. You gotta be careful and bargain shop because the prices do vay a lot on things.
This was a total accident pic but it still made a nice momento this is the nice part of the strip stamped sidewalks he he I guess I must be a small town girl if I notice things like that. Your lucky if you have curb and gutter around my neighborhood.
One of many fabulous sculptures outside of the casinos. My neck was a little sore from all the tall buildings and gauking at the spectacularness.
Planet Hollywood
This is where we stayed 2 of the nights.
Ok so this is one of the pics from the overpass walkway. See the red and blue lights on the right side of the pic above the red arrow and to the left a little. That is the Rio and well it looks like it is only a block or two away right?! Wrong it was like 2 to 3 MILES away at night off the strip across the freeway. Yeah we walked there and were so tired that we ended up sharing a cab with a couple of ladies. Yes I broke down and payed for transportation. It was so worth the five dollars and that was our share so if we went alone ten big ones for 2 miles. I would have even paid that. lolThis is the excalibur
Inside the Paris I absolutely loved this casino it wasn't dark and depressing like the rest. I mean look at the ceilings you feel like your outside.
My hunk of burnin love riding the tram through the airport. This is the easiest and traveler friendly airport I have ever been in
Look at that cute behind! Who needs a head shot when you get that view. Love you Babe!!! And I dont have to lust after this pic because I get to see the real thing everyday. Ok well I will return for part 2 but I had better work on my beauty sleep tonight.
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